During DonateLife Week, one Wide Bay local shared his deeply personal journey through illness, loss, and the gift of life that gave him a second chance and a renewed sense of purpose.
Diagnosed more than a decade ago with Primary Sclerosing Cholangitis, a rare and chronic disease that affects the bile ducts, Rob’s condition gradually worsened over time.
“I just slowly got sicker and sicker,” he reflects.
After years of managing symptoms, including multiple stents to treat blocked bile ducts and regular trips from regional Queensland to Brisbane for treatment, his liver began to fail.
“There were so many problems, my treating team said it was only a matter of time," Rob said.
The tipping point came in early 2024 when he was finally listed for a liver transplant after nearly two years of deteriorating health.
“The biggest emotional moment was being put on the transplant list,” he said.
“Before that, I was living in no man's land. Once you're on the list, your future starts to be planned. You have hope.”
But hope didn’t come easily.
A first call came just weeks later but during prep at Brisbane’s Princess Alexandra Hospital, the liver was found unsuitable. Then COVID delayed his care again.
Amid the emotional rollercoaster, Rob’s family faced even greater tragedy.
“My brother passed away on January 4, 2024,” he shared.
“At that point I actually asked to be taken off the list for a few weeks until we had time to bury him.”
The call that would change everything finally came just a month later.
“At 2am, they said, ‘Come on down.’”
“We were careful not to be too excited because of the dry run, but things just kept progressing once we were in Brisbane.
“It was terrifying, and I can say I’ve never been as afraid as I was in that pre-op room.”
An eight-and-a-half-hour surgery followed.
The transplant was lifesaving and life-changing.
With physical labour no longer possible, Rob has leant into writing, poetry, and advocacy.
“I’d always been passionate about poetry, but it was private, now I have published a poetry book about my story,” he said.
“Now with my second chance I know I want to do more than I did before.
“This journey has given me strength to put myself out there as an advocate for men’s mental health and DonateLife.
“Now every week on a Thursday I am a facilitator for the Brave Brothers Walk and Talk.
“Here I can use my life journey to talk and relate with other people going through struggles.
“I want to give back and create community.”
Bundaberg ICU and Organ Donation Specialist Nurse Karen Jenner is urging the community to take one simple step that could save lives.
“We want all Australians to register as organ and tissue donors and be the reason someone else gets a second chance at life,” she said.
“We know that 4 in 5 Australians support donation, but only 1 in 3 are actually registered on the Australian Organ Donor Register.”
Currently, around 1,800 Australians are waiting for a life-saving organ transplant, and more than 14,000 are on dialysis for kidney failure.
“Sadly, around 50 people die each year still waiting,” Karen said.
“In Australia, your family is always asked to agree to donation.
“They’re much more likely to say yes if they know you’ve made that decision.
“About 8 in 10 families say yes when you're registered, but that drops to just 4 in 10 when your wishes are unknown.”
To register or check your status, visit donatelife.gov.au/register.